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Joan,

I personally NEVER vomit, but this last sinus stuff I had, the drainage was SO bad it triggered my gag reflex and I did vomit, although it was mostly mucous (sorry if TMI). With it being allergy season, etc. it could just be drainage, especially if it happened while he was sleeping. If it was the candy and/or a tummy bug, i agree, he most likely wouldn't be eating in the first place.

Hope it passes soon for you!

Jane

From: Joan Vallee <hayro1611@...>infantile scoliosis treatment Sent: Wed, April 7, 2010 9:47:19 AMSubject: stomach issues

I know many people have posted about this recently, but wanted to see if anyone had any insight. Hayden has been really congested in his nose lately. I think it's just allergies or a mild cold. Last night he threw up in his sleep but I thought it was from the Easter candy he ate. But then today he had a "spit up" and now he is fine. He isn't acting sick, he is hungry he has no fever, just the congestion. My mom thinks it's the candy but I think it may be the congestion as well as this cast. This is a fairly new cast and seems tight around the tummy cutout. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

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Joan, does he have acid reflux?

Tonya Perkins

Asheboro,NC

mother of ,11 &

Nora,3 scoliosis, acid reflux

8th cast, Greenville Shriners,SC

From: Joan Vallee <hayro1611@...>infantile scoliosis treatment Sent: Wed, April 7, 2010 12:47:19 PMSubject: stomach issues

I know many people have posted about this recently, but wanted to see if anyone had any insight. Hayden has been really congested in his nose lately. I think it's just allergies or a mild cold. Last night he threw up in his sleep but I thought it was from the Easter candy he ate. But then today he had a "spit up" and now he is fine. He isn't acting sick, he is hungry he has no fever, just the congestion. My mom thinks it's the candy but I think it may be the congestion as well as this cast. This is a fairly new cast and seems tight around the tummy cutout. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

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Joan,How is Hayden? Sorry he is throwing up. We never had that issue. TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months. Brace 10 months 23hrs a day. Night bracing from July 08-present. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: Joan Vallee <hayro1611@...>infantile scoliosis treatment Sent: Wed, April 7, 2010 11:47:19 AMSubject: stomach issues

I know many people have posted about this recently, but wanted to see if anyone had any insight. Hayden has been really congested in his nose lately. I think it's just allergies or a mild cold. Last night he threw up in his sleep but I thought it was from the Easter candy he ate. But then today he had a "spit up" and now he is fine. He isn't acting sick, he is hungry he has no fever, just the congestion. My mom thinks it's the candy but I think it may be the congestion as well as this cast. This is a fairly new cast and seems tight around the tummy cutout. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

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No, not that I know of. He spit up a little when he was a baby, but no more than most babies, I guess. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: tonya williams <jamienoramom@...>infantile scoliosis treatment Sent: Wed, April 7, 2010 1:18:07 PMSubject: Re: stomach issues

Joan, does he have acid reflux?

Tonya Perkins

Asheboro,NC

mother of ,11 &

Nora,3 scoliosis, acid reflux

8th cast, Greenville Shriners,SC

From: Joan Vallee <hayro1611 (DOT) com>infantile scoliosis treatment @groups. comSent: Wed, April 7, 2010 12:47:19 PMSubject: [infantile_scoliosi s] stomach issues

I know many people have posted about this recently, but wanted to see if anyone had any insight. Hayden has been really congested in his nose lately. I think it's just allergies or a mild cold. Last night he threw up in his sleep but I thought it was from the Easter candy he ate. But then today he had a "spit up" and now he is fine. He isn't acting sick, he is hungry he has no fever, just the congestion. My mom thinks it's the candy but I think it may be the congestion as well as this cast. This is a fairly new cast and seems tight around the tummy cutout. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

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Thanks Tasha

He really is fine, and is very hungry today. I have stayed away from milk, and letting him eat healthy foods (no cookies, or sweets). I think it may have been a combination of skittles, and congestion. I am keeping a close eye on him. If he throws up again, I will call my Ped. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Wed, April 7, 2010 2:00:12 PMSubject: Re: stomach issues

Joan,How is Hayden? Sorry he is throwing up. We never had that issue.

TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months. Brace 10 months 23hrs a day. Night bracing from July 08-present. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html

From: Joan Vallee <hayro1611 (DOT) com>infantile scoliosis treatment @groups. comSent: Wed, April 7, 2010 11:47:19 AMSubject: [infantile_scoliosi s] stomach issues

I know many people have posted about this recently, but wanted to see if anyone had any insight. Hayden has been really congested in his nose lately. I think it's just allergies or a mild cold. Last night he threw up in his sleep but I thought it was from the Easter candy he ate. But then today he had a "spit up" and now he is fine. He isn't acting sick, he is hungry he has no fever, just the congestion. My mom thinks it's the candy but I think it may be the congestion as well as this cast. This is a fairly new cast and seems tight around the tummy cutout. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

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Hi Joan,

Audrey is having increased problems with vomiting too. I got a hold of her

doctor's office and they said we could pull the cast stomach opening outward to

give more room using " duck-billed " pliers.

mom to Audrey, 1st cast SLC

>

> I know many people have posted about this recently, but wanted to see if

anyone had any insight. Hayden has been really congested in his nose lately. I

think it's just allergies or a mild cold. Last night he threw up in his sleep

but I thought it was from the Easter candy he ate. But then today he had a  " spit

up " and now he is fine. He isn't acting sick, he is hungry he has no fever, just

the congestion. My mom thinks it's the candy but I think it may be the

congestion as well as this cast. This is a fairly new cast and seems tight

around the tummy cutout.

>  Joan

> mom to Hayden 3

> 39 degrees down from 62

> Cast number 4

> Treated at ish Rite Hospital

> Dallas, TX

>

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I told my husband that I wanted to do that as well if the vomiting persisited. He threw up twice in two days and last night he didn't throw up so maybe it has stopped. Thanks for the advice. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Fri, April 9, 2010 11:26:46 AMSubject: Re: stomach issues

Hi Joan,Audrey is having increased problems with vomiting too. I got a hold of her doctor's office and they said we could pull the cast stomach opening outward to give more room using "duck-billed" pliers.mom to Audrey, 1st cast SLC>> I know many people have posted about this recently, but wanted to see if anyone had any insight. Hayden has been really congested in his nose lately. I think it's just allergies or a mild cold. Last night he threw up in his sleep but I thought it was from the Easter candy he ate. But then today he had a "spit up" and now he is fine. He isn't acting sick, he is hungry he has no fever, just the congestion. My mom thinks it's the candy but I

think it may be the congestion as well as this cast. This is a fairly new cast and seems tight around the tummy cutout. > Joan> mom to Hayden 3> 39 degrees down from 62> Cast number 4> Treated at ish Rite Hospital > Dallas, TX>

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  • 1 month later...
Guest guest

Hi,

I would suggest you head to your doctor and have them do a blood draw. I had the that feeling like someone drained all my energy out of me, but mine was right after I had the surgery--with in the 1st month. I found out that my potassium was low. It was an easy fix- they gave me potassium pills to take and I still take them. I had problems holding my curling iron and felt a little dizzy too. I have had the stomach that gurgles too. Sometimes something warm in my stomach helped--like a warm cup of decaf tea. Popsicles also helped me with the gurgling. Sometimes it is gas, so use some Gas-X. I have been constipated and so I use Miralax everyday with my protein drink. That seems to help a whole lot. I am not doctor, so that is why I suggest you go see you doctor. That would be the best place to start. I can only comment on what I have been through.

Hang in there, and hugs,

Suzanne

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Hi group I have an issue and need help I've been feeling very weak lately but it

just happens all of a sudden. One minute im all pumped up to go work out then

all of a sudden feel weak like all the strengh I had in me is gone I even feel

shaky at times. My stomach has been bad too one day I'm constipated onother day

I'm w diarrhea and I feel bloated to the point where I can't or won't go

walking. Ohh and stomach gurgles I don't know what's wrong here but a little

about me I just lost 100lbs its been 10mths since I was sleeved felt great until

this past 2 weeks been feeling like this please help ur suggestions are always

very helpful need & want help I need to feel better soon. Thank you for your time

..

Sent from my Verizon Wireless BlackBerry

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  • 1 year later...

Hi ,

I am sorry to hear of your sons tummy problems. our daughter, with CID, has had

bouts of severe tummy aches all of her life. she is 9 now and as she has gotten

older, they have become fewer. She also had constant diarrhea until we got her

on immunoglobin. She describes her tummy aches as " someone stabbing me in the

belly button with a knife " . It is always in the evening, around bedtime,

although as an infant, I am certain it was all the time. When she was 6, she

was finally referred to a GI. she has extremely elevated gastric parietal

antibodies and has always had an ANA of greater than 1:1280 with no definable

auto-immune disease. The GI doc thought she had either celiacs or pernicious

anemia. She had occult blood in her stool. When they scoped her, they found

that she had a polyp, lymphoid hyperplasia, and small bowel bacterial

overgrowth. She does not absorb B12 or folate because of the bacterial

overgrowth. but no celiacs. this past year, we got maternal DNA result that

show we carry a 57% gene deletion for chrohns, IBD and GI cancer. Anything over

25% is considered to be disease producing. More than 70% of immune regulation

specific to antibody production is gut related. Although our immune disease is

genetic, gut problems are definately part of and contribute to immune disease.

Many people, including myself, have gut issues with their immune disease.

That being said, you are on the right trach with the GI doc. I do know it is

important to have him back on glutan for a month. we also had taken our

daughter off gluten, thinking that was the problem, prior to seeing the GI doc.

otherwise, they cannot diagnose it with scope and biopsy. as for diarrhea, I

have a problem off immunoglobin. Now back on, it is quite the opposite.....but

only at a higher dose.

I hope you are able to find some answers and your son gets relief.

Terri

Mom and both daughters, 9 and 11 with combined immune deficiency.

>

> Hi

>

> My son (8) has been struggling with stomach aches for as long as I can

remember. He is a pretty anxious kid, so we always assumed that due to his

circumstances he was just having anxiety. He is on Hizentra 1x/week and is

doing pretty good with staying healthy. 5 weeks ago he started having terrible

diarrhea and gas. He hasn't stopped since. About 3 months ago the stomach

aches were getting so bad that they were distracting him, so we started testing

him. We have run every test in the book besides scoping him and have come up

empty. After talking with his immunologist, we were referred to a GI doc, as

the immunologist was very concerned and said that anxiety doesn't cause weeks of

diarrhea. Well of course the GI doc wants to scope himy, both endoscopy and

colonoscopy. He wants us to add gluten and dairy back into his diet for 1 month

to really test everything. I am so worried about him, as it is really impacting

his confidence and desire to do his usual activities. He does fine in school,

but after he is not himself.

>

> Just wondering if any of you have dealt with this and have any suggestions.

Would love your thoughts or suggestions. I know that our PIDD kids are

susceptible to GI issues, but with totally normal labs, I am baffled and afraid

that the scope will tell us nothing as well. And then what?

>

> Lastly, could the Hizentra be causing this? Our immunologist says no.

>

> Thanks!

>

> Mom to (8) CVID and Jordan (4) CVID

>

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Hi Again ,

You may want to pull the package insert for Hizantra and read about reported

side effects. 10-14% of people given hizentra reported problems with diarrhea

and other gi related problems. If all else fails, it might be worth trying a

different product. We were on Vivaglobin and had problems with side effects.

We all switched to gammunex and did great. After going off immunoglobin for 16

months, we restarted and are all on gammaguard and are doing great with it....no

side effects....no pre-meds. It would mean infusing more volume since both are

10%.

Again, best of luck.

terri

>

> Hi

>

> My son (8) has been struggling with stomach aches for as long as I can

remember. He is a pretty anxious kid, so we always assumed that due to his

circumstances he was just having anxiety. He is on Hizentra 1x/week and is

doing pretty good with staying healthy. 5 weeks ago he started having terrible

diarrhea and gas. He hasn't stopped since. About 3 months ago the stomach

aches were getting so bad that they were distracting him, so we started testing

him. We have run every test in the book besides scoping him and have come up

empty. After talking with his immunologist, we were referred to a GI doc, as

the immunologist was very concerned and said that anxiety doesn't cause weeks of

diarrhea. Well of course the GI doc wants to scope him, both endoscopy and

colonoscopy. He wants us to add gluten and dairy back into his diet for 1 month

to really test everything. I am so worried about him, as it is really impacting

his confidence and desire to do his usual activities. He does fine in school,

but after he is not himself.

>

> Just wondering if any of you have dealt with this and have any suggestions.

Would love your thoughts or suggestions. I know that our PIDD kids are

susceptible to GI issues, but with totally normal labs, I am baffled and afraid

that the scope will tell us nothing as well. And then what?

>

> Lastly, could the Hizentra be causing this? Our immunologist says no.

>

> Thanks!

>

> Mom to (8) CVID and Jordan (4) CVID

>

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Hi Again ,

You may want to pull the package insert for Hizantra and read about reported

side effects. 10-14% of people given hizentra reported problems with diarrhea

and other gi related problems. If all else fails, it might be worth trying a

different product. We were on Vivaglobin and had problems with side effects.

We all switched to gammunex and did great. After going off immunoglobin for 16

months, we restarted and are all on gammaguard and are doing great with it....no

side effects....no pre-meds. It would mean infusing more volume since both are

10%.

Again, best of luck.

terri

>

> Hi

>

> My son (8) has been struggling with stomach aches for as long as I can

remember. He is a pretty anxious kid, so we always assumed that due to his

circumstances he was just having anxiety. He is on Hizentra 1x/week and is

doing pretty good with staying healthy. 5 weeks ago he started having terrible

diarrhea and gas. He hasn't stopped since. About 3 months ago the stomach

aches were getting so bad that they were distracting him, so we started testing

him. We have run every test in the book besides scoping him and have come up

empty. After talking with his immunologist, we were referred to a GI doc, as

the immunologist was very concerned and said that anxiety doesn't cause weeks of

diarrhea. Well of course the GI doc wants to scope him, both endoscopy and

colonoscopy. He wants us to add gluten and dairy back into his diet for 1 month

to really test everything. I am so worried about him, as it is really impacting

his confidence and desire to do his usual activities. He does fine in school,

but after he is not himself.

>

> Just wondering if any of you have dealt with this and have any suggestions.

Would love your thoughts or suggestions. I know that our PIDD kids are

susceptible to GI issues, but with totally normal labs, I am baffled and afraid

that the scope will tell us nothing as well. And then what?

>

> Lastly, could the Hizentra be causing this? Our immunologist says no.

>

> Thanks!

>

> Mom to (8) CVID and Jordan (4) CVID

>

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